Awareness Isn't Enough, IBC Survivorship Needs Its Own Framework

I talk a lot about breast cancer and I don’t have any immediate plans to stop.

Breast cancer awareness has largely been lost to commercialism, and meaningful education is severely lacking. For many people, awareness now looks like “Pinktober,” vague familiarity, and knowing someone who has or has had breast cancer. While that isn’t always true, it’s usually a safe bet that people can name which football teams wear pink gear more easily than they can name a fact about breast cancer that doesn’t involve a lump or a routine mammogram.

If that describes you, this isn’t meant to belittle your experience or your story. It’s meant to highlight how far public education has drifted from substance.

Breast cancer is more than a lump. It’s more than a screening campaign. Early detection matters. But if someone is diagnosed, would they know what to advocate for next? Previously, I’ve written about how we talk endlessly about the disease while quietly forgetting the patient. I want to continue that conversation by focusing on survivorship and what that actually looks like.

IBC survivorship remains isolativing without proper research for better support.

Breast cancer is not a single experience. It’s a life-altering journey with varying distances, routes, and outcomes. Just as no two bodies are the same, no two cancer stories are the same. It is not a cookie-cutter, “treat them and send them on their way” disease.

Survivorship is not a shared destination and with inflammatory breast cancer (IBC), it begins and unfolds very differently.

Let’s start at the beginning.

The goal of survivorship models is to support the entire cancer journey, from diagnosis through quality of life after treatment. These models guide care, follow-up, and support.

Most breast cancer survivorship frameworks are built around high survival rates, early detection, predictable treatment pathways, and favorable biology.

IBC diverges from that model immediately.

It is so aggressive that it is considered a medical emergency. Diagnosis and treatment escalate rapidly, often before patients have time to emotionally process what is happening. While there is no single standardized survivorship model for IBC, treatment is typically aggressive and multi-modal (chemotherapy, mastectomy, and radiation) followed by a unique and complex set of long-term challenges. After treatment ends, survivors are often managing lymphedema, psychological and emotional changes, endocrine disruptions, financial strain, and the reality of returning to work and daily life.

If there were a more appropriate framework to follow, IBC survivorship would align more closely with metastatic care models, where chronic disease management, holistic support, and quality of life are central. This does not eliminate treatment. It enhances care by addressing patient needs that are largely missing from current breast cancer survivorship models.

The research landscape makes this gap clear.

Globally, more than half a million clinical research studies are registered across all medical fields. Cancer research represents only a portion of that total, and while breast cancer is one of the most studied cancers, it still accounts for just a slice of overall medical research. Within breast cancer research, inflammatory breast cancer occupies an even smaller fraction. Despite representing approximately 1–5% of breast cancer diagnoses, IBC accounts for well under 1% of breast cancer clinical trials, and dedicated survivorship studies are rare to nonexistent. Most IBC research focuses on acute treatment, not long-term quality of life. The result is a survivorship population navigating complex physical and psychological realities with limited data to guide their care.

This gap is alienating.

Pink ribbon culture and celebration-focused narratives emphasize what we already know while leaving critical education undone. Being told to “be grateful” can silence very real struggles. Support groups can be helpful, but they also carry the risk of misinformation or unintentional minimization, especially when aggressive cancers are discussed within frameworks designed for early-stage disease.

As a result, survivors can feel isolated even among other survivors.

This is not about division or competition. It is about recognizing how different cancer journeys are and how a lack of research and tailored survivorship care leaves many patients unsupported long after treatment ends.

Fear does not disappear when treatment does. There is an invisible weight to long-term effects. Anxiety, PTSD, and depression are common in this population, yet mental health care is often treated as optional once medical treatment concludes. Therapy is positioned as an “extra,” rather than an essential part of recovery.

Survivorship requires trauma-informed mental health care during and after treatment. Supportive care plans that stop when chemotherapy or radiation ends fail to meet the realities survivors live with every day.

IBC survivorship begins at diagnosis. Survivors need long-term, specialized follow-up; unrestricted access to mental health care; language that accurately reflects the aggressiveness of the disease; and survivorship programs shaped by those who have lived it.

Survivorship is not one-size-fits-all. Early-stage survivorship matters but applying a default template to every cancer experience is neither effective nor equitable. IBC survivorship deserves recognition, research, and support that reflects its reality.

IBC is not louder or more important than any other cancer.

It is simply different and different deserves to be acknowledged.

About the Author

Stephanie Pilkinton, RN, MSN, FNP-C, PMHNP-BC

Founder of Sweet Tea & Science | Nurse Practitioner | Writer | Wellness Advocate

Stephanie is a dual-certified nurse practitioner with a passion for blending evidence-based medicine with everyday life. She believes wellness should feel approachable, not overwhelming — and that a little Southern comfort and curiosity go a long way.

Follow her journey and join the conversation at Sweet Tea & Science.